EDIT: July 2018
I wanted to update that the diet I discuss in this post did not work, and, I developed an eating disorder during this period. Quitting coffee did actually help my bladder pain, but nothing else I did slowed or reversed my weight gain, or helped my pelvic pain. Don’t drink the diet koolaid like I did!
If you’re struggling with diet and weight loss, please check out this podcast:
And now, back to the original post:
I had a bit of a surprise this week.
You folks remember how I’ve been writing about the stabbing bladder pain that showed up last summer? How this came on the tail end of a two-year struggle with weight loss, and my theory that it was about hormones, cortisol fatigue, insulin resistance, maybe estrogen dominance?
Here’s the latest.
My nutritionist has just had a new baby, but she’s still happy to work with me for the sake of continuity, and she herself has used diet to correct an estrogen imbalance that had been causing her own weight to stick on and never, ever seem to budge. Over the past month I’ve quit coffee – that’s HUGE for me, given I used to *love* coffee so much and that Sweetie and I have owned a coffee roaster. Never again. This, more than any other single thing (though all the other things have had a cumulative effect) has made me feel better. Even if it’s just that I am not on a clock when I wake up anymore. I don’t *have to* have coffee anymore.
Instead, I’m a convert to matcha green tea. I like to make mint tea, and then whisk in some matcha with a tea ball, and then add some almond milk. It works great with lavender tea too. I don’t drink black tea either. This is on the recommendation of my nutritionist, and my naturopathic doctor. Basically cut out dairy, wheat, sugar, anything processed, any coffee / black tea. My food has been a lot of recipes from “Vegan Under Pressure”, and I’m gradually shifting into an 8 week meal plan masterpiece my nutritionist has compiled for me, complete with recipes.
Oh, and I’m not really eating chicken anymore. Maybe once a month, only if it’s organic. No beef, no pork. Basically, I am a pain in the butt to have at dinner parties.
I will be eating fish for sure.
I’m not sure if I’m losing any weight yet, but I have felt a shift in my body. I think, nutritionally, I’m finally on the right track… at least for now.
Anyway, the surprise came a couple of days ago, when I saw a new doctor, a pelvic pain specialist in Vancouver.
Holy crow, you guys. It was really great. Stressful, pretty painful, but great.
Women, you especially know what it’s like to talk to your doctor about period / pelvic pain and be given birth control or other meds that don’t work. That’s the story of 1 in 10 women. I actually think that ratio is higher, and that women power through or stay silent about pelvic pain, and simply stop going to doctors after years of not getting help. Because I am a talker, and I tell pretty much anyone who asks me how I am (assuming we’re friends) what I’ve been going through, pain and weight wise, many women take this as permission to share their stories with me.
In my estimation, I’d say chronic pelvic pain affects at least one in three women. I think the problem is that “menstrual pain” is considered to be normal. It’s normal if, after exercising, you feel better. Sure, then that’s a great way to cope. It’s not normal if you can’t walk, have to miss work, throw up, pass out. *So many women* have opened up about years or decades of doctor’s appointments and frustrations. Doctor’s office options are pretty limited. Birth control. Mirena IUD. GNRH antoganists, with synthetic hormones added back.
I recently heard about endometrial ablation, and was interested in pursuing that, but then the bladder pain showed up. That became my new priority. I thought it was somehow related to the hormones, but I didn’t understand how. I was cautiously optimistic about this new doc, because she’s one of the best in the province and country.
That’s why I feel so freaking lucky, you guys. Through luck, because of my specific symptoms, I managed to get in front of this wonderful pelvic pain specialist in very short time. And what’s so beautiful about this clinic’s approach is it’s “patient-centered care”, meaning, they don’t follow a generic check list of protocols for all patients. They talk to you, and find out what you want. They don’t *make you* go through all the medical protocols in a specific order. They look at what you want and need in life, what your care goals are.
After laying out my options, I was shocked when she said a total laparoscopic hysterectomy was my best bet at eliminating my pain. My bladder appears healthy, and my new doc has seen this before – the stabbing bladder pain is likely *referred pain*. Nerve sensitivity after 20+ years of painful menstruation. That’s what ignoring menstrual pain for decades got me. That’s also a testament to how powerful mindfulness, meditation, and lifestyle modification can be. You can get pretty far, living with chronic pain, when you have to.
I’ll get to keep my ovaries, so I won’t go into menopause right away, but yeah. I’m getting spayed!
It’s a major surgery with a six week recovery, and Sweetie still has a broken foot. The summer is the busiest time of year out here in Tofino, so I will ask for the surgery to be done in the fall or later. Many thanks to my facebook friend who recommended this site: http://www.hystersisters.com/ SO MUCH useful information and reassuring stories.
I will continue with my diet and naturopathic healing protocols indefinitely. We’re talking life-long commitment here. The surgery does not eliminate the importance of following a diet that is going to ease healing and help prevent future problems. This diet, and hopefully some weight loss, will set me up to bounce back really well from the surgery, and even though my uterus will be gone, my ovaries and the rest of my body will still need the good nutrition of an anti-inflammatory, estrogen balancing diet. This diet, my mindfulness / meditation practice, and my work on using gentle movement and positive attitude to cope with chronic pain are *all* recommended by my new pelvic pain doc. If I hadn’t already been doing them, she would have been recommending it. The gentle movement piece in particular will be essential to restoring a healthy nerve response in my bladder, after monthly inflammatory cycle has been eliminated. It’ll take some gentle coaxing to get my nervous system to realize that certain movements don’t *need* to hurt anymore. I’m not expecting a quick fix, but my friends, I am *so very happy* about this coming surgery.
It all comes full circle.
Sweetie is feeling a lot better since her foot has been put in a cast. She’s mastered showering with a bag on her leg, and she’s knit an enormous sock to cover the plaster. It’s really pretty cute.
So that’s the latest news, my friends. I hope this is somehow helpful to my blog friends – according to my statistics, 75% of my readers are women. At minimum, one in ten of you will have been through something like this, and I’m betting it’s more like one in three. I think this is a part of the negative effects of the silence created by menstrual pain not being considered polite conversation. I have had broken bones and pinched nerves hurt less than my regular monthly period. Yet while at work, out in the world, I’ve had to pretend like things are normal. I breathe through it, or maybe I stay in bed for a day or two. I just lived through it.
How many women at any one time are pretending to feel normal?
It’s not just period pain, either. It’s all women’s health stuff. We don’t usually talk about pregnancy loss openly, the way we’d talk about the death of a known family member. Women feel different ways about the loss of a pregnancy. Men too, of course. Women often don’t talk about struggles to conceive, or maybe they’re grieving their fertility because they have to get a hysterectomy. (I certainly won’t be grieving my fertility.)
Times are changing though, and I’m glad of that, because creating a space for women to talk about what we experience with our human female bodies is a part of our healing. Witnessing and acknowledging pain helps to carry it. So much of our pain experience is all the crap that surrounds the physical pain. A lot of that pain is just, the silence.
Our bodies are so fragile, and prone to error.
I remember a beautiful dog in a session said to his mum, when she asked why he was meant to die at such a young age. He said, “I wasn’t, my body was born broken. It kept getting sick. I left my body because it was going to just keep getting sick. Let’s try again.” (I’m paraphrasing from memory.)
I wish, sometimes, that it were as easy with people. Many of our animal friends will not live long enough. But so many of them get to come back to us, in new bodies. Maybe in your family, you may get to see or wonder if your cousin’s child is a grandparent or great-grandparent reborn. In rare cases, siblings who died accidentally can be reborn at late-in-life miracle babies, or as the child of one of the siblings left behind.
Bodies are prone to error, and so are our lives. That’s why we need spirit guides, or guardian angels. It’s hard being alive. There aren’t many guarantees.
I don’t personally feel like I *signed up* for this pain experience. I can certainly find meaning it in now, in that requires me to allow and welcome help from my dearest friends and Sweetie. But honestly folks, this is a genetic thing. This problem just runs in my family. It’s like the vehicle I leased for this life has a few foibles, and I said “OK, I can deal” and hopped right in. I’m not one to tell others that their pain and suffering is a part of a plan, that they elected to experience before birth. I don’t find that idea helpful to me personally when I’m in pain, so I don’t pass that along to others.
But what I do believe is that we have to know we’re going to wade through some unexpected and necessary pain and suffering. That’s just mortality. Maybe that’s my inner Buddhist speaking. I think we can *make* it meaningful, and purposeful, by moving with it, by trying to grow with it, and by trying to help others along the way.
That’s how I’m approaching all of this, and really, that’s my life’s motto right there. Just try to help each other along the way.
Love you guys!
19 thoughts on “You too.”
Thank you for such a beautiful post. Glad there’s more light on the path. Helps us guys to understand also.
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Yes… Its OK to eat fish cause they don’t have any feelings… Broiled flounder. Baked potato corn.
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I see you quoting Kurt Cobain 😉
Kate, I’m glad you found a great doctor who really listened to you. There’s nothing worse than being bowled over by pain which no one can really pinpoint. You of course know your body and your needs better than anyone.
I was in a similar position. For 30 years I had been beset with major menstrual pain — total exhaustion with migraine, sciatic nerve referred pain, and non-stop cramps that often doubled me over in pain for at least 7-10 days a month. I literally could barely get out of bed, even though I forced myself into work. My doctor did nothing except the usual ultrasound, which found everything normal, and wanted me to take BCP continuously (but I still got cramps, so what was the point). They didn’t do any tests for endometriosis or anything. I just had to suffer, so I stopped trying to find a fix for it, except for trying every different pill under the sun. I also carried around a lot of weight.
My last choice was to get the Mirena. And oh my God, I should have done it years ago. No periods, no cramps, no pain anymore. I still get some mild mood swings from hormonal changes, and a few headaches, but I feel 80% better. My weight has also stabilized and I have more energy to exercise.
I wonder if that might be an option to try, before you go the surgery route? Of course, it’s your decision and you might have considered this already but I thought I’d share my story. Feel free to email if you want more details.
I hope it all goes well and will be sending positive vibes your way! 🙂
Mirena is absolutely a god send for many women. I’ve heard multiple success stories. For some, it’s a temporary solution, and for me, it’s unfortunately not an option. But thank you for suggesting.
Surgery is a major step, but I’m so ready for it. Women in recovery rarely need more med’s than ibuprofen.
I’m going to have a party before hand, and ask guests to wear something red!
I want to add I’m really sorry about the way you were treated. After decades, our experiences with docs who hurt us during exams and then tell us we are normal or there’s nothing they can do, it has a cumulative traumatizing effect, and it’s such a common experience.
It is very unfortunate we have to be lucky, ferociously determined, or both, in order to get the help we need and deserve
Thanks for sharing this, Kate! And best of luck on your surgery. What a relief to discover a solution. My own monthly cycle has always been pretty brutal and intense, and most people are horrified or just plain uncomfortable discussing it. I had the Mirena IUD put in last year in hopes it would lessen the heaviness and severity of the periods and I am seeing a gradual difference. I would love to not have it all! It’s such a huge monthly drain and takes me out for days. The issue is genetic for me as well. For years I just silently suffered like my mother did, along with other women who dare not bring up the taboo subject of what occurs to our bodies. Cheers to you coming forward with your own experience. None of us gals should be embarrassed or ashamed to discuss what happens to our bodies. We should feel comfortable taking the steps necessary to ease the pain and suffering. It’s not the 1950’s after all…
I’m so glad there’s relief on the horizon! All of this resonates so much with me right now…still trying to find a doctor (or doctors) familiar enough with my condition to come up with a treatment plan, but this gives me hope that it’s possible! I love this line: “How many women at any one time are pretending to feel normal?” SO MANY.
Oh yeah, sometimes it takes a very long time to build that healthcare team. It helps me to understand that different experts bring different assets to the equation, and we really have to build our own wholistic healthcare team.
For me, my team has become my nutritionist, my naturopathic doc, my family doc (who basically prescribes things and initiates referrals) my urologist, the pelvic pain specialist, and a therapist. I’m not always seeing a therapist, but usually every 3 – 5 years I have some processing to do, and it helps me feel better. That psychological piece has a *huge* impact on people with chronic pain / medical challenges.
So we really can’t afford to neglect any of it. Many complementary practitioners will have a sliding scale available for people who need it.
Have you heard of the book “Kicking Sick”? The author, Amy, is one of the first people I encountered who explains the need for patients to initiate a wholistic approach and ensure the people on their team really have their best interests at heart. http://amykurtz.com/
Thank you for sharing, Kate. I’m glad that you and your experience have been validated and that you’re receiving proper treatment.
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Kate! I just discovered that not only has my subscription to your podcast dropped off (I fixed that), but that you have been cranking them out! Lots has happened and I look forward to many hours of hearing what you’ve been up to since October. I’m planning to book another session soon, now that my kittens are approaching adulthoo.
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Weird! What happened, I wonder? I’m so glad you’re enjoying them.
Thank you for sharing your story! It’s true society is set up in a way that we need to hide our pain. My cranks are debilitating, I’m in bed for 3 days unless I’m on prescription pain meds. I’m looking into alternative therapy for it, but I think the pain is a lesson, Like you said. Wishing you all the best with this upcoming womb work!
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***cramps! But it feels like cranking of my insides for sure
Thank you! I find it helps if I alternate Tylenol #2s (with codeine, but not enough that it’s a controlled narcotic in Canada, its over the counter here) with ibuprofen.
You can ask a pharmacist about what to take or request from a doctor – pharmacists often know more about the meds available than the docs.
Thank you Kate! I’m currently in Greece there isn’t much I’m on a mixture of naproxen and paracetamol but I’m gonna try and get some anti inflammatory meds from the UK next month. I’m hoping the Chinese medicine herbs, when I’m finally able to see the doctor in the fall, will help. I’ve heard they can work wondering if you’ve got a legit Dr & proper herbs. Also hip opening yoga has been super helpful. Sending love and light your way!
That’s a very similar mixture. Naproxen didn’t do much for me, but it’s more effective than ibuprofen for many women.
Can you get stick-on heating pads in Greece? I use the robaxecet stick on heating pads that stay hot girls 12 hours and I just wear them all day.
Also ask your UK doc about a TENS unit when you get back. I just heard about them and read some studies. I’m not going to bother with it since the surgery is soon, but it could be worth looking into for you.